#97588 06-18-2009 04:05 AM | Joined: Jun 2009 Posts: 24 Member | OP  Member
Joined: Jun 2009 Posts: 24 | I've been reading this site for several weeks now, and figure it's time to say hello and thank all of you for all of your posts. They have done much to help me to get to through things thus far. Our family began dealing with cancer when our only grandchild, Joey, was diagnosed with lymphoma when he was seven years old. We lost him on 6/02/07. He was nine. Now, it appears that it's my turn to fight. When my diagnosis came, I was frightened, confused, and still trying to catch my breath from the loss of Joey. I became frustrated by the lack of pertinent information available online. When my wife discovered this site, we found a wealth of first-hand advice and specific information to help me with issues such as eating difficulties, pain management, and my PEG tube. My chemo and radiation ended in March 2009, and I am finally coming out of the fog. My wish is to thank all of you by offering my own experience, especially to anyone who might be where I was eight months ago. I hope that my presence here will be of some benefit to the group. Nice to meet you all!
Dana, Male, Age 52, DX 11/08
SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Dana, welcome to OCF. Its always so nice to hear from someone who has been helped by this site. With your experiences, Im sure you will become an an active member in no time giving others guidance. The best part of OCF, the main site is packed full of information, while the forum has tons of first hand info, it also has a heart. Best of luck with your continued recovery.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Dana, Did they mention HPV to you? Congrats on surviving the surgery and Tx. We all know how tough those are physically and mentally.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | And nice to meet you, Dana.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Nice to meet you Dana and welcome to our little home that keeps growing much too fast. I'm so glad we helped you and good luck with everything in the future. Man , I am so sorry about your grandson. That has to still hurt and always will. I have a few grands myself and can just imagine the feelings you must have. Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2009 Posts: 24 Member | | OP Member
Joined: Jun 2009 Posts: 24 | David,... HPV was only mentioned in passing. Thanks for the link!
Dana, Male, Age 52, DX 11/08
SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | What you give will come back to you ten fold. thanks for being here!! and willing to share your experience it means so much!!
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Welcome Dana. I read what you have been through and I cannot imagine loosing a child or grandchild. I don't know if anyone ever recovers from that. But, cruel as it is, life goes on and YOU are now the fighter. Do you still have your Peg? How is eating going for you? What can we help with?
Some of us have not had Pegs, some have but all of us have had to relearn swallowing.
Hope to hear more from you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2009 Posts: 24 Member | | OP Member
Joined: Jun 2009 Posts: 24 | Thanks, Donna
Yes, I still have the PEG. I'm finally getting about 50%+ of my calories in orally, but some days swallowing is still a challenge. I'm still learning to swallow down into my throat, not up into (and out of) my nose. Getting better with practice. I had the RND, tonsilectomy, and PEG install all done at the same time. It was one-stop shopping!
Dana, Male, Age 52, DX 11/08
SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | | Joined: Jun 2009 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 64 | Welcome Dana,
I have found this by far the best support group around. The people here are willing to share their experiences and willing to help you out when you need it. I was totally lost and was scared. I have found comfort in this group
Pat
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
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